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  1. By: Chelsea Goldstein, Dysautonomia Information Network Perhaps, you've worked with your boss to make accommodations for your health at your job. You've been open with coworkers about your dysautonomia, and you've developed a handbook of pretty clever tricks to get through your workdays. Maybe you've even changed jobs in an effort to find a career that doesn't make you sick. Even still, you've used up all of your PTO, you can barely function when you get home from work, and weekends are consumed by trying to "heal" as much as possible so you can do it all over again next week. If thi
  2. By: Chelsea Goldstein, Dysautonomia Information Network One of the many difficult aspects of living with dysautonomia is that very few products are designed specifically for our needs. The medications we take are usually considered "off-label" for dysautonomia, we use hydration products designed for athletes or children, and assistive technology is often created with other populations in mind. I will continue to dream of, and advocate for, a world where people with dysautonomia have a voice in the creation of technologies that support our everyday lives. In the meantime, this articl
  3. by Chelsea Goldstein, Dysautonomia Information Network Mental health conditions, like depression, are often difficult to talk about because of their stigma. If you live with dysautonomia and depression you may be even more hesitant to talk about your mental health needs out of fear that your dysautonomia will be dismissed as "all in your head." Unfortunately, this can lead to improper treatment of dysautonomia, depression, or both. However, we rarely discuss how it is normal to live with BOTH depression and dysautonomia. In fact, research demonstrates that about 25 to 33% of people
  4. By: Chelsea Goldstein, Dysautonomia Information Network If you are working and managing your chronic illness stop now. Take a deep breath, remind yourself that you are a rock star, and give yourself a high-five. It is difficult for anyone to have a career and manage the responsibilities of life such as family, household tasks, and self care. Throw chronic illness into that mix, and anyone who can balance their health and a career is a superhero. Or magician. Maybe a bit of both. If you aren't working, but are managing your chronic illness, remember that taking care of your health is
  5. By: Chelsea Goldstein, Dysautonomia Information Network Living with chronic illness often feels like one big Catch-22. For example, we need to work to survive, but working can be so tough on our bodies that it causes precarious health. Many of us have left jobs we love as a result, but it's also in these moments that we need our reliable income the most to cover our medical bills and other expenses. If you can relate to this, you've probably had a roller coaster of a career path - like me - as you try to figure out just what job, exactly, will work with your body. One option is to co
  6. By: Chelsea Goldstein, Dysautonomia Information Network If you have ever worked while living with a hidden chronic illness, you have probably struggled over whether or not to share your illness with your boss and coworkers. You've likely asked yourself questions such as: Should I tell my boss about my illness? Should I tell my coworkers? When should I tell them? Will I be treated differently once they know? These are big questions, and there is not one, correct way to answer them. The choice to disclose your health condition(s) at work is a personal one, and only you can decide the
  7. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neurosci
  8. Autonomic nerve disorders (dysautonomia) refer to disorders of the autonomic nervous system (ANS) function. Dysautonomia is a general term used to describe a breakdown or abnormal function of the ANS. The autonomic nervous system controls much of your involuntary functions. Symptoms are wide-ranging and can include problems with the regulation of heart rate, blood pressure, body temperature, perspiration, and bowel and bladder functions. Other symptoms include fatigue, lightheadedness, feeling faint or passing out (syncope), weakness, and cognitive impairment. (1. Mayo Clinic, Autonomic Nerve
  9. edriscoll

    EDS Why Zebras?

    Why are EDS patients called Zebras? Patients with EDS frequently call themselves Zebras, why? According to the Ehler's Danlos Society, it originated from something taught to medical students about diagnosing patients - "When you hear hoofbeats behind you, don't expect to see a zebra" In other words, look for the most common and usual, not the most unusual when diagnosing a patient. The Zebra became the symbol for EDS patients because, as with most dysautonomia disorders, it takes years to gain a diagnosis because the patient looks too "normal" or seems too young to have so many ail
  10. DINET member name: Nadèche Hanique Nadèche's hometown: Brabant Province, Holland, Southern Netherlands Diagnosis: EDS, POTS Facebook: https://www.facebook.com/happymailforfighters/ Instagram: https://www.instagram.com/happymailforfighters/ Wat inspireert werk Nadèche's , in haar eigen woorden ... Ik heb EDS, dus ik heb met symptomen mijn hele leven en werd gediagnosticeerd toen ik 11 jaar oud was. Ik werd gediagnosticeerd met POTS toen ik 19 jaar oud was, ik ben 21 nu. Al jaren wilde ik mijn eigen kaart project te beginnen, maar ik wist niet hoe te beginnen enz. Vorig jaar heb
  11. DINET member name: Nadèche Hanique Nadèche's hometown: Brabant Province, Holland, Southern Netherlands Diagnosis: EDS, POTS Facebook: https://www.facebook.com/happymailforfighters/Instagram: https://www.instagram.com/happymailforfighters/ Click here to read this profile in Nadeche's native language, Dutch What inspires Nadèche's work, in her own words... I have eds, so I’ve been showing symptoms my whole life and was diagnosed when I was 11 years old. I got diagnosed with POTS when I was 19 years old, I am 21 now. For years I wanted to start my own card project, but I did
  12. DINET member name: Katie Haynes Katie's hometown: Youngsville, NC Diagnosis: POTS, EDS, MCAS, AMPS (Amplified Musculoskeletal Pain Syndrome), IBS, Alopecia Photography: https://www.facebook.com/KatieHaynesPhotography/ Smiling While Sending Hope: https://www.facebook.com/Smiling-While-Sending-Hope-561096004224670/ VOG project: https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=563489880651949 Cambridge Mask project: https://www.facebook.com/pg/Smiling-While-Sending-Hope-561096004224670/photos/?tab=album&album_id=589899214677682 I
  13. During the summer of 2017, DINET conducted an informal survey that asked questions about the age of onset of dysautonomia symptoms, diagnosis and the experiences our female members had during the diagnostic process. The survey results contained in the pdf below show the raw numbers collected from respondents answers, as well as selected written answers from respondents. Many women shared their stories within the survey answers and the similarity of experience was striking. This was not a scientific study and the data presented represents a sampling of information and opinion and shoul
  14. Every Sunday on DINET's Facebook page, our Social Media Coordinator, Lauren Mlack asks DINET followers questions about living with dysautonomia and chronic illness. Here are highlights from some of the surveys. Find out how your answers compare to the rest of the community. "Do compression stockings/tights help your symptoms?" 56% yes, 44% no "How did you find out about DINET?" 11% friends and family, 89% through research online “How many of you are dysautonomia fighters and how many are dysautonomia caretakers?” 84% fighters, 16% caretakers "While trying to find a d
  15. The University of Alberta and McGill University released their findings for a new therapeutic agent that may hold the potential for the prevention of MS. In the new study, according to the synopsis published in Medical News Today, the researchers examined tissues from donated human brains. They found that the brains of people with MS had very high levels of a protein called calnexin compared with the brains of people who did not have MS. The team then used mice that had been bred to model human MS to examine the influence of calnexin in living creatures. The study authors wer
  16. “It will happen slowly, but it will happen.” I remember my neurologist, Dr. X, standing in front of me, her stethoscope around her neck and her hands in her pockets. She was quiet, relaxed and exuded confidence. Her composure gave me faith that it truly would happen. The Brain Fog would loosen its grip and my short-term-memory would improve. My cardiologist referred me to Dr.X because I had a panic attack at a zoo after getting separated from my husband. I didn’t even think to call to reach for my phone. I sat down on the closest bench and willed myself not to cry. I guess sitting was e
  17. DINET member name: Sierraboo214 Sierra's hometown: Tracy, CA Diagnosis: POTS, Mast Cell Activation Syndrome, Ehlers Danlos Syndrome, PTSD, Gastroparesis, Immunodeficiency Website: https://www.instagram.com/chigos_closet/ Sierra's pillows for patients project: https://www.gofundme.com/portpatientpillows In Sierra's words.... I suffer from POTS (stage 3 dysautonomia), mast cell activation syndrome, Ehlers Danlos Syndrome, PTSD, and immunodeficiency. I currently model and do animal photography. I love to sing and act, but my newest project is making free port pillows for port-
  18. DINET member name: LotsofLoveByRuth Ruth's hometown: St. Louis, Missouri Diagnosis: POTS, CFS Website: www.etsy.com/shop/indiangirl4him In Ruth's words... I was officially diagnosed with POTS, as well as Chronic Fatigue Disorder in April 2015. Before my diagnosis, I was constantly on the go and having to depend on others for leaving the house has been frustrating. My psychiatrist suggested I find a craft or hobby to make me feel like I’m contributing something to the world, so I started making natural products and selling them in February of 2017. Before POTS, I didn’t tak
  19. DINET member name: Joey Horist Joey's hometown: Addison, IL Diagnosis: POTS, Gastroparesis email: sharperjoedog@aol.com YouTube Trailer: https://youtu.be/c_LuB8iDdcE Facebook: https://www.facebook.com/joey.horist In Joey's words...... I was recently diagnosed with Gastroparesis and for 9 years now I have been dealing with Postural Orthostatic Tachycardia syndrome. It snuck up on me late one summer night and life has not been the same since. Unfortunately, due to my health, I almost didn't finish high school & I have since had to put my college studies on hold. For the first
  20. DINET member name: Dot Dash Hilde Dorothy's hometown: Victoria, British Columbia, Canada Diagnosis: POTS Website: https://www.amazon.com/Ms.-Dorothy-L.-Hilde/e/B0748429VH Photography Website: www.dorothyhildeart.com Email: timely_dottie@hotmail.com About Dorothy.... Dorothy Hilde is a mother of two boys. She lives in Saanichton, B.C. She has one grandson, Sawyer, and a mischievous rescue, Dash. She has a passion for photography, gardening, writing, and art. She is a published author with a series of children’s books called the Life of Dash. Her favorite past-time is hiking
  21. DINET Member Name: videopaw Lyndsie's hometown: Anaheim, CA Diagnosis: POTS website: https://www.etsy.com/shop/SulleysSpot In Lyndsie's words...... My name is Lyndsie and my service dog in training is Sulley. Sulley’s Spot was created after James P Sullivan aka Sulley. He is a labradane who will be a medical alert and mobility dog trained to assist me through the day. He is learning to pick up on changes in my heart rate and guide me to a safe place along with many other things. I am unable to leave the house without fear and Sulley has been a great help. He provides me with the
  22. DINET member name: B.KELS Kelsey's home town: Los Angeles, CA Diagnosis: POTS/NCS Music video link: https://vimeo.com/224607332 My portfolio: https://bkelsstudio.cargocollective.com/ Notes on the project: My name is Kelsey Boncato and I am an LA-based visual artist living with POTS/NCS. My project is a music video I animated and directed for the electronic soul group, Idesia. The piece is entitled “Ain’t Over” This video was a collaborative effort. The Music Producer, Co-Director and writer of the music and lyrics to this song is Daniel Oldham. Daniel also lives a life strongly affecte
  23. DINET member name: Missy Milton Missy's home town: Fayetteville, AR Diagnosis: Dysautonomia (POTS & NCS) website: https://www.melissamiltonart.com/ In Missy’s words……. Living with dysautonomia requires me to spend many chunks of hours laying down. Laying down is a necessary tool for regulating my roller coaster blood pressure. After about a year of spending so much time being “stuck horizontal” a dreadful, negative boredom ensued. I decided to start painting again as a fun way to pass the time when I can’t move about. Before my illness, It had been over 30 years since I had
  24. NOTE from DINET: This article is page 1 of a packet focused on children & teens living with POTS. This information is available on our site and also as pdfs that can easily be emailed, printed, or printed & copied. This information can be used as a handout for teachers, coaches, family members and anyone else who is in regular contact with your child yet doesn't understand what they or you are going through living with POTS. We sincerely hope it helps. If you know a child or teen who has been diagnosed with something called POTS, you may be scratching your head. You're not al
  25. Autoimmune Basis for Postural Tachycardia Syndrome Hongliang Li, MD, PhD; Xichun Yu, MD; Campbell Liles, BS; Muneer Khan, MD; Megan Vanderlinde‐Wood, MD; Allison Galloway, MD; Caitlin Zillner, BS; Alexandria Benbrook, BS; Sean Reim, BS; Daniel Collier, BS; Michael A. Hill, PhD; Satish R. Raj, MD; Luis E. Okamoto, MD; Madeleine W. Cunningham, PhD; Christopher E. Aston, PhD; David C. Kem, MD Abstract Background Patients with postural tachycardia syndrome (POTS) have exaggerated orthostatic tachycardia often following a viral illness, suggesting autoimmunity may play a pathophysiol
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